Feel a bit like dog crap today due to Stargardts Disease.. Please. Read this.

10 Jul

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Overall from my biog .. If there’s any I want you to read, this is it

I’ve written honestly about me and my experiences, but one thing to remember; Think about the positive!, at least we still have some peripheral vision!  Think of everything we can (still) see!  Think of all the things we can do!!! (take care though, just extra vigilant like skiing, for me I go early in the morning when it’s quiet and follow people in stages )

Whatever you want to do.. Do it!.. It’s possible!.. We can:

  • Walk
  • Talk
  • Smile
  • Laugh
  • Hug
  • Love
  • Shop
  • Run
  • Cart-wheel
  • Shout
  • Scream
  • Cry
  • Pick flowers
  • Pick our nose
  • Ride a bike (maybe wear bright yellow builder jacket and helmet :p)..
  • The list is endless…

If you need help out shopping for sizes, just ask! if the shop assistant is rude, just ignore them and continue your day and have a pasty!! Haha
.. Be happy.

Be brave, be positive, and one day, hopefully, there will be a cure I hope for us all…

I have passion, I have the will to succeed.

I would have never had th confidence to stand up I in front of a crowd if I didn’t have stargardts disease, now I can’t see them, it’s fine!!

I would have never expressed on a canvas and whacked a load of paint everywhere .. I probably would have just followed the crowd… So for you too, just be you; embrace that your different and it’s ok to have a shit day, she’d a tear or email me with a rant of how annoying it is !!

Unfortunatley my eyes now are still deteriorating.  I’d say my blind spot when I loom into the distance is pretty big .. I am also so-called colour blind too but I’m defo not haha!

I find myself sometimes gazing into my own vision as even though I’m blind what I see is crackers all the wiggly lines and confusion,

Peace everybody and hope this helps.

If you need any technical support or a serious Convo me and Gaz are here Xxxxxxxx or any parents wanting to speak with my mum just give me a bell… We’re still going through it now x

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8 Responses to “Feel a bit like dog crap today due to Stargardts Disease.. Please. Read this.”

  1. Christine Rigas Fearon July 10, 2012 at 3:23 pm #

    Kayley, thanks for making me smile today.

    There are some days when it is really hard, and others that are fine and I only notice it when I try to read.

    Your positive energy is really helpful and I think a lot of us Stargardt’s need that. I love your painting approach too!! I’ve always referred to my Stargardt’s as Picasso eyes. Maybe he had it, you never know!

    Thanks again,
    Christine

    • kayleyrose July 10, 2012 at 4:18 pm #

      Hey Christine!!!

      Aw thanks for reading and making a comment that made my day !!
      I know how you feel! Im really positive but some days If something tips me over the edge I have to shed a tear!(once in a blue moon!).. But we’re only human at the end of day.

      I have also notice a massive change in my reading where even a feW months ago I could still skim-read with a bit of hissing on very large font but really recent it takes me ages to just read sentence in large font.. Rghhh the thing we put up with ey.. But keep goin!!

      I’ve never even thought about Picasso.. Good point! Maybe he I’d! And his works reall bright too, maybe he was one of us hha!!

      How long have you ad stargardts??

      Where are you from??

      What do you do??

      Great to talk to youXxx and thanks again for getting intouch!!

  2. kim meeson July 14, 2012 at 8:03 pm #

    What a brave girl you are! I just love your positive attitude, you carry on keeping that beautiful chin up.

    luv u loads xxxxxxxx

    Aunti kim xxxxxxxxxxxxx

    So proud of you!!!!!!!

  3. Brenda Millington July 20, 2012 at 1:35 pm #

    We laughed and we cried when we read your blog on Stargardt’s.

    You must have given people in your situation a lot of hope and willingness to be brave. Carry on the good work!

    Aunty Brenda & Uncle Doug xxxxxxxx
    Well Done

    • kayleyrose July 20, 2012 at 3:11 pm #

      Thankyou very much!! I hope it brings hope that’s way it’s for!:DXxxx I cried and laughed writing it too!!!Xxx

  4. Bela November 16, 2012 at 9:31 am #

    Hi
    Found your piece inspiring but I do worry about the radiation exposure on the eyes from reading the iPad very close to the eyes. Yes one can enlarge the font but it is so much quicker to read right up close. Can you advise
    Bk london

    • kayleyrose November 17, 2012 at 11:45 am #

      Hi!
      It is impossible for me to read any normal print as its just far too small. for me the zoom and holding my iPad close to my face Its the only way to read emails etc!
      xxx

      • Bela Kulcsar November 17, 2012 at 12:21 pm #

        HiDid you seek medical advise as to the effects of reading so close to an ipad?RegardsBela Date: Sat, 17 Nov 2012 11:45:33 +0000 To: bkzk11@hotmail.co.uk

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